The Type 1 Game

Friday, January 5, 2018

So now that 2017 is in the books, there is a lot of talk
about 2018 New Year resolutions.At the
end of 2015, after struggling with Pericarditis, my resolution for 2016 was
that I wanted it to be the year of my “reboot”, the year of a better and
healthier me.That kindof went well
until July when I crashed mountain biking, hit my head, suffered a concussion
and the rest of 2016 was one of the worse and most difficult periods of my life
living with Post-Concussion Syndrome.For 2017, I had simple aspirations.And I also stopped calling them “resolutions”, using the term
“intentions” instead. For some reason,
intentions seems more like it isn’t just me, but rather me working with the
universe, trusting that it will give me what I need. For 2017, my intention was simply to not mess
myself up again like I did in 2015 and 2016.Even if last year was another tough year for me with the ongoing
Post-Concussion Syndrome, I am very thankful for the improvements in my health
in the last 12 months and that I did manage to not hurt myself again which
would make me believe that I have smartened up and gained at least a bit of
wisdom.Or maybe it was just better luck
with the universe giving me a much needed break?I’ll go with a certain amount of gained
wisdom and a bit of luck. And thank you
universe for having my back…

My intentions for 2018 are simply to listen to my body in
order to continue to get healthier and to also continue to work on myself
emotionally.These intentions will
likely be what I strive for the rest of my life actually.I believe that all of our hang-ups, bad
habits, addictions and vices are symptoms of underlying emotional trauma.Everyone has them.It’s simply a part of being human.If you don’t think that you do, it’s just
that you’re unconscious or unaware.Society
doesn’t encourage or nurture the recognition and healing of our wounds.Unhappy people make better consumers.Our psychological wounds are really just
unpleasant emotions that we are holding onto, emotions that are stuck.I believe that it is our purpose to explore,
work through and release these buried emotions.It is the absolute best gift that we can give ourselves, our families
and the world.If everyone did this, it
would change the planet.Now I’m not
saying that I am better than anyone else because I have been putting in lots of
time and energy working through my crap, I am just saying that doing this is
the single thing that I have ever done that has had the greatest positive
impact on every single aspect of my life.Do you want to stop overeating, you need to find out WHY you are
overeating.Do you want to stop drinking
too much, you need to find out WHY you are drinking too much.Do you want to stop working too hard, you
need to find out WHY you are working so hard.We’re taught to search for peace and connection externally whereas the
answer is internal.What are you trying
so hard to avoid feeling?

Last fall, my physiotherapist at the UdeM concussion clinic
compared Post-Concussion Syndrome with a long-term, seemingly never-ending hangover.I didn’t really get the analogy at that time
since I felt more like I was constantly drunk rather than hungover.But the last month, the intermittent hangover-like
headaches have surfaced and that ironically made me quite happy.I felt happy because changing symptoms
usually means pealing another layer of the healing onion and also because it is
still easier for me to focus with this headache rather than being overwhelmed
by the spaced-out, disconnected, lost in fog feeling that I had been feeling for
so long.In this case, for me, the
hangover is indeed much better than the buzz.

I am very encouraged to be having more and more good days,
intermittent periods of feeling normal again, like my old self.But it scares me at the same time, because I
can’t be (or chose not to be) the same.Our
brains are different from our other organs.They can heal, but they can only take so much trauma.I’ve read an article where they used the
analogy of the brain as a tin can.Once
dented, the dent can be fixed by popping the aluminum back out bringing the can
back to its original shape and condition, but each and every time that you do
this the can becomes more susceptible to further dents until eventually the can
simply becomes permanently damaged.Looking
back, knowing what I now know about concussions, I certainly have suffered a
few growing up, never anything as debilitating as this last one and I certainly
don’t want to live through another one to see if it will be even worse.I mean, I will live my life, but I never want
to forget what I went through this past year and a half and will do every
single thing that I can to protect myself from another one by being vigilant,
as mindful as possible and never forgetting.

When I was young, I remember wondering if my friends saw the
world the same way that I did.Was my
green the same as their green?How about
their red and blue?Did we see colors
and shapes differently?There was no way
to know but I thought it would be so very cool to see the world through someone
else’s eyes and brain.As I got older
and began better understanding how the human body worked and looking at our
differences, I began to understand that our experiences of the physical world
are certainly unique.But for the most
part, we just unconsciously assume that everyone experiences the world like we
do.Living with Post-Concussion Syndrome
is similar in that it’s very subtle, invisible and everyone just assumes that
you’re fine because on the outside you look fine.I get upset when someone tells me that I’m
fine now.Don’t make that
assumption.That’s not for anyone else
to decide but me.#mybrainmyrules.Type 1 Diabetes is very similar in that it is
an invisible disease.Even if Type 1
gamers seem fine, it doesn’t mean that they are.

I’ve become a bit of a hermit.Even if watching TV is usually OK for my
brain now, especially non-action programming consisting mostly of dialogue, I
don’t watch it as much as I used to.I’ve
become disinterested in sports in general to be honest.Maybe that will change with the winter Olympics
next month?And I still can’t really
watch contact sports without cringing every time a player gets slammed.We really need to stop obsessing about the big
hits, fights and violence in sports.It’s
sad that society gets off watching humans hurting each other like that.Even if they do get up and seem fine (and
look so very “tough” in the process) after receiving a blow to the head, we’re
starting to realize that damage is being done and that there are long term
consequences to this.Chronic traumatic
encephalopathy (CTE) is widespread in many contact sports.CTE has been diagnosed in a staggering amount
of retired professional football players and even in players who have only
played at the high school level.These
former star athletes don’t seem so tough anymore when they shoot themselves in
the head or even worse, become the next mass murderer before turning the gun on
themselves.Only then will we ask
ourselves what went wrong.Maybe when
your brain is reduced to mush it’s bound to have horrific consequences?

Growing up in Canada, I played hockey.I can’t say that I ever really loved the
game.Playing wasn’t really a choice
unless you couldn’t afford it. It’s just
what every boy did in the winter and every father’s dream.I loved the feeling of skating but always
hated the physical aspect of the game, the intimidation, the cheap shots.Playing bantam house league, I checked the
star player in the opposing team and he didn’t get up.Even if it was a clean check, he twisted his
knee when he hit the boards.My coach
and parents were so proud of me.When
you stop and think about it, that is quite messed up.It would have been illegal (assault) to do
that outside of the ice rink, but glorified and encouraged in the game.And now, with modern equipment, players feel much more invincible and don't feel as much
when they're dishing out punishment so they can hit that much harder. The
helmet only protects the skull, it doesn’t protect the brain. And unless you've
suffered a bad one with lasting effects it is impossible to understand how bad
a concussion can be. It affects every single aspect of your life. Everything.
There is nothing you can do without using your brain, not even fall and stay
asleep. It's completely different from a sprain or breaking a bone. The ER will
send you home if your brain isn’t bleeding or swelling, but it doesn’t mean
that you’re going to necessarily feel fine in a few days like they tell
you.Traumatic Brain Injury (TBI)
recovery takes from a few days to forever.Maybe things will never change and contact sports will continue to be
popular but I'm not sure that we're doing as much as we should to protect our athletes,
especially young players. A teenager surely doesn't have enough knowledge and
wisdom to truly understand the risks and possible long term effects of getting
his brain scrambled on a regular basis.We created all contact sports along with the associated attention and
hype that we have given them.We made
our beds and now we get to sleep in them. I wouldn’t bet on it but I sure hope that we
wake up sooner than later.

I believe intentions to be so very powerful.About 4-5 years ago, I was drawn to minimalism,
simplifying my life, slowing down, enjoying the little things more, mindfulness,
meditation…I loved reading about it all
and really felt that it resonated with me.But for some reason I couldn’t put it all into practice.I still felt like I was racing through my
life and that all of this sound advice was really more like fiction for me even
if in my heart I knew it to be truth.Then I hit my head and suffered persistent physical PCS (Post-Concussion
Syndrome) symptoms that literally forced me slow down, simplify, be more
mindful, do more yoga and meditate.I
sent the intention out to the universe and it responded by creating life
circumstances that gave me what I asked for.Crazy and so very simple at the same time.Be careful what you wish for I guess, but at
the same time I feel very grateful for all the good that I have in my life right
now.

Today, January 5th, 2018 is exactly 1 and a half
years since my concussion…I have come
such a long way since then.Here’s to
more healing in 2018.Cheers !

Wednesday, November 1, 2017

There is this non-stop narrator in my head constantly
commenting and analyzing the information captured by my senses.He’s like a commentator for this game that is
my life.The only time that he really
shuts up is when I’m in a state of deep sleep, but if I happen to wake up in
the middle of the night, he seems to instantly want to make up for the chatter
break with what seems like so much more babble that instantly kills the peace
and quiet.He’s quite persistent and can
be a real asshole at times.Other times
I don’t really notice him as much.He
tends to freak out when I sit in silence at the beginning of yoga or if I try
to meditate.He calms down and tends to
make more sense when I’m on a solo bike ride.He can be very hypercritical but then he can also occasionally come up
with the most insightful advice and ideas.This narrator is actually the one coming up with these words right
now.I am just typing them.

This narrator acts like he is an expert in regards to
everything including my concussion recovery.He constantly makes timelines of how and at what pace I should be
recovering.Riding on the riverfront
trail on Thanksgiving weekend, I was not feeling 100%.My focus was off.I felt spacy, ungrounded, clumsy and dizzy.These physical post-concussion syndrome (PCS)
symptoms have been coming and going lately.On that day, while I was rushing to take full advantage of the nice
weekend, they were ever present.I
decided to still go for a ride, but the narrator in my head was babbling on about
how unfair it was that I wasn’t feeling better by now.I felt this dark cloud following me.I felt depressed.Towards the end of the ride, I came across a
man in an electric wheelchair.It was the
universe’s way of reminding me that I had so much to be thankful for even if I
was suffering with the minor inconvenience of feeling off at that moment.I understood and knew this to be true in my
heart, but the narrator in my head was still telling me that this whole thing
was so very unfair and that I deserved to feel better.Why is he such an asshole at times?

With this beautiful fall weather, one of the highlights of
my week is a long solo coffee shop ride usually on Sundays.For some reason, I can’t set a ride time
beforehand.I need to sleep in until I
feel fully rested, eat breakfast, get ready and simply go when I’m ready.That usually ends up being around 11 am, but
I can’t really commit to being on my bike for 11 the night before because for
some reason I will feel stressed and won’t be able to sleep.In order to feel my best, I also need to not
have to drive to a ride.Driving used to
be somewhat OK, but now it often brings on PCS symptoms when I venture out on
open roads outside of the city.Riding
with others or any type of social interaction before or during my ride could
also throw things off.I could probably
have ridden one of the shorter Elgin mountain bike distances, but the drive to
Elgin and all of the social interaction before, during and after the race would
likely have thrown me off and caused symptoms, so I didn’t participate.It sounds stupid, but that’s how it is.

I also still have lots of problems with darkness.I notice it when I go down to the basement in
the evening.My brain can’t seem to
process the quick change from light to dark.Night riding with lights can maybe be OK if I’m by myself and around the
city with lots of street lighting, but could potentially be overwhelming with a
group which is why I haven’t participated in any of the club cyclocross night
rides this year.Sorry guys.I wish I could.Driving at night is also a bitch.It’s not so bad in the city for shorter
distances, but coming back from my parents’ house, that live out in the country,
on Thanksgivings, I wasn’t feeling so good even if it’s only a 30 minute
drive.And when I push through it, I
quickly become quite exhausted and pay for it the next few days.

A few weeks ago was our 2nd annual ATV outing
with Adele, my dad, nephew and brother-in-law. It was a 30+ minute drive to get there and we
were meeting at 11; two things that I don’t really deal with that well right
now.As soon as we started out on the
ATVs, I could feel the physical symptoms creep up and the narrator in my head
started going ballistic.The symptoms
are somewhat subtle, kindof like a spaced-out, disconnected, head-spinning buzz,
but it’s the feeling of losing control that makes the experience so very devastating
and traumatic.I don’t think that the
feeling can be precisely described with words and unless you have felt it you
have no idea.It’s like trying to
explain to a young person how it feels to be old.It cannot be explained, it must be
experienced in order to be understood.Another
analogy that comes to mind is that I don’t feel my heart beating, my lungs breathing
and my digestive system digesting most of the time.They just happen effortlessly on their own
while I’m busy doing other stuff.Our
brain is the same.It does so much
automatically and effortlessly that we don’t realize until it doesn’t
anymore.The symptoms eventually
subsided after a while and we ended up with a 48 km ATV exploration ride.I paid for it dearly the next day
though.I felt like I had been run over
by a pickup truck when I woke up the next morning.The narrator in my head had some really nice
things to say about that…

I have been doing Yoga Nidra once a month for over a year
now.Yoga Nidra is basically a guided
meditation which brings you to a state of consciousness between wakefulness and
sleep.At first, I used to always nod off
into sleep, but a few times I really felt like I was surfing the waves between
the two states.And during this time,
the narrator in my head was still talking to me, but he was making so much
sense.My creativity was soaring and the
useful, peaceful thoughts just flowed effortlessly.The thing is that the narrator that I speak
of isn’t real.He’s just an illusion of my
mind, the messenger, and the information that he communicates comes from either
my ego or my heart.For brief periods
during Yoga Nidra I feel that I am indeed connected to my heart, not the
physical organ but my true self, my intuition.And when we experience such connection everything just makes so much sense.

With me, I know that the lesson that the universe wants me
to learn is about control. We are sold
the idea that we can control our destiny through positive thinking, hard work,
never giving up, mind over matter, but at the end of the day there is no such
thing as being in control.Life isn’t “in
control”.It’s all an illusion, a lie
that we’ve been told.To be human and to
live life fully is to realize that we are not in control.It’s more a matter of listening to our
instincts and trusting the process of life.Our actions create our reality and are the only thing that we can
control.

15 years ago today, Adele’s life was saved when she received
her very first insulin injection.I
still remember it vividly like it was yesterday.She didn’t do anything to cause her Type 1
Diabetes.It wasn’t because she ate too
much sugar.It wasn’t because she didn’t
exercise enough.And it certainly wasn’t
something that we wanted.It was
completely out of our control.

Type 1 gaming is the ultimate lesson in relinquishing
control.Even after 15 years of playing
this Type 1 game, Adele’s blood sugars are still not controlled all of the time
like those of a non-diabetic.Her blood
sugar is still out of range regularly because that’s how the Type 1 game
works.Even after 15 years of playing
this Type 1 game, we still really have no idea what we’re doing.I mean we know the basic rules that insulin lowers
blood sugar and that Adele needs a steady dose of it continuously to maintain
life, but other than that, all that we can control are to keep up with all of
the physical tasks required to keep her alive.

Surrendering control, it is so very simple, but at the same
time the most scary and difficult thing to do.But wait, maybe that’s just the narrator in my head talking?

Thursday, September 28, 2017

Google tells me that post-concussion syndrome (PCS) is when
concussion symptoms last longer than one or two months post-injury.Estimates range from 5 to 30% of concussion
sufferers will develop PCS and even if there are certain risk factors, they
can’t really explain why certain people develop PCS and others don’t.Now I am not a doctor, but looking back I can
clearly see why my brain is taking so long to heal.The last 15+ years have been the gradual
making of a PCS perfect storm…

May 3rd, 2000 was the best day of my life.Our daughter Adele came into this world and
we were ecstatic.But at 7 weeks, she
developed a kidney infection after which they discovered that one of her ureters
(tube connecting her kidney to her bladder) was malfunctioning causing a backflow
of urine which lead to the infection.She needed surgery to correct the problem, but they couldn’t do it since
she was so young, so we needed to postpone it for another 8 months.To prevent future infections during the wait,
she was prescribed a daily dose of anti-biotics.Looking back now, this surely wreaked havoc
on her gut flora which we now know is one of the likely causes of auto-immune
disease.Just before her 2nd
birthday, after being sick for months, Adele was diagnosed with her first auto-immune
disease, Celiac.We hadn’t yet really
figured out how to cut gluten from her diet when she was diagnosed with her
second auto-immune disease, Type 1 Diabetes a few months later in October 2002.Then a few years after that came the third
auto-immune diagnostic, Hashimoto disease, which affects the thyroid gland, the
treatment being life-long thyroid hormone replacement therapy in pill
form.And this was all in less than 5
years.

To say this was a difficult time would be an understatement.I felt like the boxer who falls to his knees
after getting smashed with a left hook and as soon as he stands up, still very
wobbly, gets hammered again and then again; a three punch TKO.But if you looked at me or chatted with me,
you wouldn’t have known.I was never
really good with being in touch with my emotions at that point in my life so I just put on
a brave face and took care of business.Just like Nike told me: “Just do it”.I told myself that I was stronger than all this shit.The thing was that at that time, my definition
of what being “strong” meant was incorrect.I just thought being “strong” meant to be able to stiffen my upper lip,
to take it like a “real man” without flinching.As a father, my reaction was that I needed to fix this. I needed to save and protect my baby girl. The most stressful disease on our auto-immune
menu was by far the Type 1 Diabetes management.A person with Celiac disease can’t overdose if they mistakenly ingest
Gluten and you would really have to screw up with Synthroid (thyroid
medication) for it to be lethal, but the insulin required for maintaining life of
a Type 1 is so powerful that even a single drop too much can have devastating,
even a lethal effect, especially for a 2 year old baby.With the Type 1 Diabetes management, we were
deciding the insulin dosage.We
calculated based on a prescribed formula, but we were still deciding how much
insulin Adele was getting in each injection every time she ate.Because of this, I became hyper-vigilant with
Adele’s care.I didn’t really sleep
anymore.We got up at least once every
night to make sure her blood sugar was in a safe range and I obsessed 24-7 over
insulin doses and what and when she ate.I really thought that I could do a perfect job as her
pseudo-pancreas.I was determined that I
could fix this if I just tried hard enough.In my mind I was at war with the Type 1 game beast and just wasn’t going
to back down.

All of this kept me real busy which was good because I
really didn’t want to feel the pain and devastation of having my baby be so
sick and have to go through all of this.I thought that if I just remained positive that I could beat it.And by positive I mean blocking out every
single negative emotion and thought.To
make sure that I remained as numb as possible, I rode and raced my bike more
and more.Now some of you will think
that this approach is a healthy way to burn off some steam and it was to a
certain extent at the time.The problem
is that it is but a short-term solution.This technique does not work long-term which I have since proven in the
last few years.Stress releases cortisol
(this is our fight or flight response) which gives you an incredible boost of
energy and clarity.It is so powerful
that it can make a mother lift a car to save her trapped child.Yes, it is THAT powerful, but like other potent
drugs it must be used cautiously.I
abused it every minute of every day.The
regular exercise temporarily released the built up pain and tension but it was
kindof like taking medication that causes ulcers to alleviate the pain of your
current ulcers.Pouring stress over
stress was really just throwing gas on the fire.Looking back I can now see that there was
absolutely no way that this was going to end well.

As I rode and raced more, my results improved.And for me each race was almost like a matter
of life or death.I was racing against
Type 1 Diabetes.And because of this,
getting results made me feel like I was making progress in my quest to fix
stuff, to beat and kick Type 1’s ass.Getting results made me “happy”.Knowing what I know now, happy isn’t the correct word to use here.Winning a bike race gave me a temporary high
that masked the Type 1 gaming pain and suffering.And because these external accolades were
temporary, they created a never-ending cycle where I just wanted to pursue them
with the same intensity as a drug addict looking for his next hit.

This intensity seeped into every single thing that I
did.The steady flow of stress hormones
made me very efficient at checking things off my check list.My boss appreciated my ability to get things
done at work.Looking back, I now
realize that Cyclebetes was really born from this push.The nurses and doctors at the Diabetes clinic
loved us and gave us constant praise because we were doing such a good
job.I started to feel like I could do
it all.I felt invincible.It’s so easy to get caught up in this since
society keeps giving you praise because you are hitting bullseyes, getting shit
done.Society glorifies the high
achievers.It just loves to build them
up as heroes.But in reality, I was in
no way a hero; I was really just a fool unconsciously killing myself trying to
win a race that cannot be won by pushing harder or going faster.

All this time, my body was talking to me.I would often feel very tired.I couldn’t push myself as I once could in
training.I just thought that I needed a
little break after which I would feel a better for a bit and fall deeper into
the hole that I was digging.I was
exhausted, frustrated, depressed and showing so many signs of adrenal burnout.But I still didn’t listen to what my body was
telling me.In 2015, my body spoke
louder when I was diagnosed with Pericarditis.I remember doing a 5 hour road ride in March and suffering like I had
never suffered before a few weeks before the diagnosis.I thought that I just needed to train harder
to get out of my funk.Instead I was
awoken with chest pains not sure if what I was experiencing was a heart
attack.I slowed down, but still not
enough.

I was in way over my head, but still very clueless in so
many ways to what life was trying to teach me.After recovering from the Pericarditis, I tried racing again.I told myself that it was just for fun now,
but the old thought patterns kicked in again and before I could readjust and
regain my balance, I hit a root on a downhill mountain bike trail which sent me
flying through the air.Airborne, I
remember thinking that I really fucked up this time just before hearing and
feeling the crash of landing on my head.My crash, concussion and PCS are in no way random occurrences.They are the climactic perfect storm after
many years of not paying enough attention.

I am not writing my story for your pity.I am writing my story because it helps me
understand.I am writing my story
because the more that I understand, the more it helps me heal.And I am sharing my story in case it can also
help someone else.As humans, we are constantly
seeking connection.In this sense,
hopefully you can in some way connect to my written words.

I am now beginning to understand that running away from our
problems is actually very cowardly.Sitting
down face-to-face with your shit requires so much more bravery and is what
being strong really means.Running away
from our problems or numbing ourselves will never solve or fix anything because
it is based out of fear.As humans, our
first reaction is to run away from what we’re afraid of.To let go of this fear through acceptance is
the only way to grow and heal.And what
we’re left with after releasing fear is the only thing that is real.We are left with love.

Disclaimer: The information contained in this blog is for informational purposes only and should not be considered to be professional medical advice whatsoever. I am not a doctor and do not have any formal medical training.